Heralding the Dystonia Medical Research Foundation’s 4th Annual Bronx Zoo Walk, I couldn’t be more hopeful of all the future holds for our community of Dystonia patients, mothers, fathers, sisters, brothers and friends…sharing challenges, life struggles and hard-fought victories.

With Dystonia Zoo Walks burgeoning across the country – 13 in 2018 – awareness is on the rise as we celebrate the promise of tomorrow. Fundraising is how we push that promise to fulfillment. Each of us bears the potential to activate our friends, families and colleagues to cure Dystonia. Start with determination, add in a good measure of persistence, and a dash of keeping expectations at bay. Strength in numbers means we’re not asking for the moon. Remember, our fundraising efforts sow the seeds of hope.

Gather at the Bronx Zoo on Sunday, September 16 for a memorable day of Dystonia awareness, fun and FUNdraising. Enjoy refreshments and festivities and then roam the zoo at your leisure. Proceeds benefit the Dystonia Medical Research Foundation. With collective activism, we can cure dystonia.

]]>https://dystoniamuse.com/2017/12/27/happy-holidays-2/feed/6dystoniamuseForbidden Pleasureshttps://dystoniamuse.com/2017/09/11/forbidden-pleasures/
https://dystoniamuse.com/2017/09/11/forbidden-pleasures/#commentsMon, 11 Sep 2017 23:24:01 +0000http://dystoniamuse.com/?p=66019Continue reading →]]>Recently, I blew up my Universe – shopping for shoes. Formerly a forbidden pleasure, I literally soared to new heights trying on all sorts of heels. Though I must confess, I don’t know how my fellow females bear the discomfort of those pointy toes and stilettos that send me teetering and tottering.

Notwithstanding the daily roller coaster ride presented by my Dystonia, my feet have led a relatively ho hum life, long relegated to the safety of Aerosoles’ “Forgive” model and a sparing assortment of sneakers, plus a few pairs of carefully chosen and largely unexciting boots.

So fancy me, perched on a footstool in DSW surrounded by treasure troves of ladies footwear in an endless variety of heights, shapes, styles, sizes, fabrics and colors – feeling as deliciously decadent as the most luxurious chocolate dessert. Gingerly, I eased my feet into a pair of 3 inch black suede pumps, thinking, like the Little Engine That Could, “I think I can, I think I can,” and, just like that shiny blue engine, I actually could! Suspended in a state of disbelief – and by a pair of magnificent for-me-miraculously-high heels, I strutted across the room, a battery-powered cyborg towering over the profuse displays of ladies shoes surrounding me!

As Dystonia Awareness Month approaches, I’m thrilled to fill in first place on my Dystonia Awareness Dance Card with the 3rd Annual Bronx Zoo Walk on September 10. This FUNdraising event has become my pride and joy, a day to celebrate awareness and make our way one step closer to realizing our dream of curing dystonia. We should all remember:

When a star is born, They possess a gift or two
One of them is this, They have the power to make a wish come true

When you wish upon a star, Makes no difference who you are
Anything your heart desires will come to you

If your heart is in your dream, No request is too extreme
When you wish upon a star, As dreamers do

The Bronx Zoo Walk is a day for Dystonia dreamers to come together at the spectacular Bronx Zoo to gaze upon the amazing wildlife roaming the lush greenery and dream about days to come when we are free as an uncaged beast from Dystonia.

Why: Because we can make our dreams come true… Raise awareness of dystonia and funds for better treatments and a cure. Another reason: Our Zoo Walk Challenge is back. Every new and incremental donation over last year is being matched dollar-for-dollar by an anonymous donor!

You can also dance your way into dystonia awareness by participating in the Dystonia Medical Research Foundation’s Dystonia Moves Me campaign, which runs throughout the month of September. Obtain materials using the following link: www.dystonia-foundation.org//shop/product_detail/14088

]]>https://dystoniamuse.com/2017/08/12/lions-tigers-bears-year-3/feed/0dystoniamuse9287823_s Fotor 12017 Bronx Zoo FlyerTap Dancing Class…or Pricelesshttps://dystoniamuse.com/2017/07/21/tap-dancing-class-or-priceless/
https://dystoniamuse.com/2017/07/21/tap-dancing-class-or-priceless/#commentsFri, 21 Jul 2017 14:46:07 +0000http://dystoniamuse.com/?p=65938Continue reading →]]>Did you ever think someone in a wheelchair could tap dance? Well think again. With special gloves sporting metal plates affixed to their palms and fingertips, the members of Mount Sinai Rehabilitation’s tap dancing class skillfully manipulated their hands from “heel to toe” along to a crooning Jerry Lee Lewis. I couldn’t help but tap my toes in time as I observed their display of skill and joyful tempo. Attired in tap shoes and a glittery “Gotta Dance” tee, Mary Six, a former Rockette who lives with dystonia, taught us about brushing and cramp rolls as I languidly swayed to the enticing music. Then Mary Six waltzed around the room demonstrating with her feet the unique steps each participant should execute with their hands.

They say where there’s a will there’s a way. Everyone in this class has certainly found their way, giving me pause to reconsider what we really need to accomplish our goals. “Disabled” you say? Perhaps you need to review your dictionary, starting with the meaning of “ABLE!”

]]>https://dystoniamuse.com/2017/07/21/tap-dancing-class-or-priceless/feed/6dystoniamuseIMG_0142 Fotor.jpgDisability Pridehttps://dystoniamuse.com/2017/07/10/disability-pride/
https://dystoniamuse.com/2017/07/10/disability-pride/#commentsMon, 10 Jul 2017 12:05:43 +0000http://dystoniamuse.com/?p=65842Continue reading →]]>Yesterday was my first occasion participating in New York City’s Disability Pride Parade and I couldn’t have been more proud and inspired by the very best New York City has to offer as I marched with Mount Sinai Rehabilitation. As our joyous celebration wound its way through the city streets on a hot Sunday – 5,000 richly diverse human beings strong – we forgot the pounding sun as we shouted our disabilities from the rooftops.

“Disability Pride” teems with an inherent irony: Take pride in a lack of ability? Yes, we announce ourselves with pride and incite inclusion. What is more empowering than accepting – and loving – ourselves, imperfections and all? We puff out our chests in celebration of how we persevere…and more…notwithstanding our disabilities and of all we overcome amid the daily muck muddying but by no means devaluing our lives. Whether we’re wheelchair bound, deficient in sight, gait, hearing or speech, struggling with learning or mental deficit, suffering from a disability that is “hidden” or glaringly evident, we take heart in our robustness of spirit as we bend and sway but never break in response to the challenges we face and conquer.

I am Pamela Sloate. I have Dystonia and I’m proud!

Click to view slideshow.
]]>https://dystoniamuse.com/2017/07/10/disability-pride/feed/6dystoniamuse80489597_s copy_FotorMe 2.0!https://dystoniamuse.com/2017/06/02/me-2-0/
https://dystoniamuse.com/2017/06/02/me-2-0/#commentsFri, 02 Jun 2017 13:45:19 +0000http://dystoniamuse.com/?p=65752Continue reading →]]>Post DBS, my life has been revolutionized by a startling revelation: Traveling from Point A to Point B is as “effortless” as moving from one foot to the other! I exist in a surreality I never could have imagined. Who would have thought I’d ever be in a position to compare and contrast smooth and twisted gait! Conquering distance has become user-friendly. Has NYC shrunk? This on-the-go rookie well knows the act of walking straight is deceptively simple – even miraculous – and with profound effect. Now that all my ducks are lining up in a row, I attach new meaning to the words “independently mobile.”

I stand before you “Pam 2.0” – action-oriented, driven and efficient – roaring out of the gate to tackle my errands and responsibilities with the vigor of an NFL linebacker. I’d never grasped the smooth side of multi-tasking or the effervescence of living life on the run. Dystonia erected a prison of limitations constraining my every effort…in ways even I didn’t fully appreciate. Sojourns out of my neighborhood loomed daunting. Rain or inclement weather provided a convenient excuse to stay home. For many years, life passed before me in lackluster shades of grey. My involuntary movements and their psychological toll crowded out the innumerable possibilities that lie within arm’s reach when we’re not squandering energy struggling with basic bodily operations. Now I feel free as a bird spreading her wings for the first time.

They say life is about the little things. For me, life is about a wealth of glorious but supremely basic minutiae virtually invisible to most of us…empowering us to enjoy a magical day!

At first I was afraid
I was petrified
Kept thinking I could never live
Without you by my side
But then I spent so many nights
Thinking how you did me wrong
And I grew strong
And I learned how to get along…

After a tumultuous 40 year relationship – plaguing me with a myriad of annoyances – I’m finding it challenging to cut the cord with my anticholinergic, even now that my brain bionics are waiting in the wings. Flexing its muscles, my anticholinergic is determined to stick around for Act II. However, I’m equally determined to boot him off the show.

Hardly known for my patience, I’ve exhibited unprecedented forbearance in the painstakingly slow process of Walking The Plank, even, shockingly, proactively taking a detour from the weekly weaning schedule when my walking grew funky. It’s all a delicate balancing act of amping up the power to compensate for lost “juice.”

With grad school awaiting me in the fall, I’d love to restore my short-term memory and normalize my urination so I’m not constantly rushing out of class for an impromptu rendezvous with the ladies room. The dream of being pill free shines strong, fortifying me with resolve to go the distance, no matter how long it takes. So Mr. Anticholinergic, as Gloria Gaynor sang so well:

Go on now go, walk out the door
Just turn around now
‘Cause you’re not welcome anymore
Weren’t you the one who tried to break me with goodbye?
Did you think I’d crumble?
Did you think I’d lay down and die?
Oh no not I, I will survive…

]]>https://dystoniamuse.com/2017/04/24/i-will-survive/feed/10dystoniamusedreamstime_xs_13606270_editedMay I Have A Glass of Water?…Revisitedhttps://dystoniamuse.com/2017/04/06/may-i-have-a-glass-of-water-revisited/
https://dystoniamuse.com/2017/04/06/may-i-have-a-glass-of-water-revisited/#commentsThu, 06 Apr 2017 15:41:55 +0000http://dystoniamuse.com/?p=65533Continue reading →]]>In 2012, I shared my deepest, darkest phobias about my speech in a post titled “May I Have A Glass Of Water.” Notwithstanding 4+ years pounding out my anxieties on this site and finally conquering my self-consciousness over my gait – ironically at a time when my involuntary movements are fading away – I continue to entertain a disgruntling hyperawareness of every word I utter.

During conversation, I find myself a decidedly un-detached observer, appalled at the sounds that just emerged from my mouth despite my earnest efforts to enunciate. I’ll practice a word in isolation again and again only to mutilate it during conversational speech. Too many words continue to evade me and I’m starkly aware of the abundance of sounds I misform.

Since DBS, I’ve been operating on speed dial, sentences tumbling out faster than I can articulate them. In an effort to climb out of my ditch, I resort to conversational CPR, searching my inner thesaurus for synonyms to toss out to my confounded listener…or literally spelling out words l-e-t-t-e-r b-y l-e-t-t-e-r. Conversation presents a bout of oral gymnastics that leaves me exhausted.

Recently, I stood on line at Starbucks on a Saturday morning, all set to tackle a monumental challenge: ordering a Grande Decaf Soy Latte. The barista stared at me in confusion, then slipped a blank piece of paper and pen across the counter. Gulping down my pride, I dutifully wrote out an order I knew I’d never properly execute orally. Perhaps next time, I’ll opt for tea!

As the Dystonia Medical Research Foundation honors our canine friends this February with their Dogs For Dystonia Virtual Walk, I’m moved to consider all my miniature schnauzer – Ellie – has meant in my life and the invaluable lessons she has taught me.

Bright-eyed and bubbly, loving, loyal and eternally optimistic, Ellie has infused my world with her exhilarating jubilance and unwavering affection. After an eon navigating life as a solo act, Ellie is a beacon of light brightening my days. She’s my steadfast companion virtually everywhere I go and I’ve connected with a cornucopia of maternal instincts that have long simmered beneath the surface yearning for expression. I wholeheartedly embrace my role as Ellie’s momma and find myself reveling in the joys of motherhood.

With the dramatic improvement in my gait post DBS, my energy level has risen closer to – though certainly not matching – Ellie’s and we’ve become partners in crime, exploring the neighborhood and local parks with vigor. Indeed, the changes Ellie has wrought in me are a huge reason why I reached for the brass ring and embarked on my DBS journey. Ellie is my most enthusiastic cheerleader of my newfound mobility and we celebrate our new life every day!

Ellie and I are thrilled to participate in Dogs For Dystonia to pay tribute to our faithful canine friends and the countless ways they enrich our worlds. We proudly join with the Dystonia Medical Research Foundation, fellow patients, friends, and their pets to celebrate our hope that one day we will indeed eradicate dystonia!

I encourage you to visit the Dogs For Dystonia website, where we’ve enlisted our “best friends” as fundraisers and share our heartfelt stories of how our pets have changed our lives: